I am not surprised that you are not feeling festive. The story of your dog was heartbreaking - such a sick thing to do. I really feel your loss because my animals have always been so special. I think you are right to go out and get another though - you have the memories of the one you lost but there will be another to love again.

tina72 - the German Christmas tradition around the tree sounds wonderful! i always prefer to leave my tree to put up at the last minute so Sotired, yes, definitely make it a German Christmas this year.

But you know there is one thing here that amazes me - and that is the fact that your d is here, and more than just here, she seems to have plenty of life in her to do the things she wants now. That in itself is a miracle when you really thought that you were going to lose her and I for one was on tenterhooks, dreading to hear the news that she had passed away. There sounds to be a stubbornness there and there seems to have been a shift in the relationship between the two of you, and also between you and the illness, which has led to change for the better.

I cannot believe that things will not get better for you in 2018. Heaven knows but you out of everyone deserves for life to be easier. I have said before, your story has been one of the most harrowing but I really hope for a better year to come. And starting off by getting another dog has to be a great thing to do.Hugs! You are amazing!

__________________Believe you can and you're halfway there.Theodore Roosevelt.

What we desperately need in NZ is funded trained ED community respite nurses. Given that a large part of treatment takes place at home, and the unique nature of the illness and treatment, having some professional support that could visit the family home, give the carer a break for even half a day, or work intensively with the carer & person with the ED to iron out issues...

Don't tell me this isn't possible because I know from personal experience that this exists for other types of chronic illnesses. There is a voluntary organisation for Motor Neurone Disease (a terminal illness) that has supplied this type of service on a volunteer basis but using trained experienced district nurses.

For spinal patients leaving Burwood Spinal Unit, they send a team of specialists to the patient's home if necessary around the time of discharge, as they are high-care patients with lots of gadgets & technology. That is funded by the DHB.

For seriously ill persons with ED related medical conditions we have zero of that type of help available, I haven't even heard of it in the cities where they have ED specialists & IP/OP services.

Let's see in 2018 if we can get this happening or at least get some traction on the idea, now that we have a government whose interests are more aligned with social services. I often wonder why the NMD Society is so resourced and I'm not sure of the answer, could it be that it strikes males in mid-life?

This has to be possible at some level. And it makes good economic sense as well, as it would help make treatment at home more effective with less acute hospitalisations.

SoTired, I have just read this entire post, my heart goes out to you, your family at this time. While she is still struggling, there is definitely still a lot of hope for her.

Hi guys,
It's ironic that you mention MND seabird as my mother died of that over twenty years ago now.it does happen to women,but it's less common I guess.im also thinking that the services for it have obviously made tremendous strides in twenty years as there was no respite care available back then-we had to get my mothers sisters to look after her when we took a rare break.
So maybe in twenty more years there will be respite available for caregivers of chronic illness patients.
D is being quite difficult-which is common here when she starts feeling a bit better.she is now planning to move out as she says I am too controlling.
The truth is that I'm exhausted with her.she is stubborn to the point of stupidity,she won't listen to reasonable thoughts on her diet-no fizzy,light food,no instant noodles.my h and I have made the decision to bow out of her treatment as much as possible from this point on.i know that many people here are willing to do this for years and years,but I am not.
If she has to fall flat on her face to accept that she doesn't know best,then so be it.i feel-and h agrees-that it's her stubbornness that will either save her or kill her.i want her to move out.i desperately need a break from her right now and for a while.
I just can't keep on with this.if,as you say seabird, we had some kind of respite care...if we had alternatives when fbt doesn't work...if doctors acknowledged that there are sometimes consequences to having had anorexia...but mental illness followed by physical illness is a kicker.
Apparently if you've had or have anorexia,nothing else can ever go wrong with you.its like a magic amulet against any other illness ever happening ./s
Melstev, it was my smallboy who had lead put in his drinkbottle-my dog died of sudden onset heart and lung fluid.once it went into her stomach,which happened while she was on every med available I made the hard decision to have her put to sleep.
We have adopted a new rescue sooner than I expected to but she is her own goofy character and we are enjoying her a lot.
We are off on a final family trip-final because I suspect that the girls will be living their own lives by next Xmas.or maybe I'm just hopeful they will be....

Thanks Torie.but it just never ends here.today I had to break my kids hearts,especially smallboys,and return our new rescue to the shelter.wonderful with people ,but even though we had been told that she was fine with other pets it turned out she wasn't as she grew more comfortable here.that is not what I wanted to do on Xmas eve.
D is doing ok currently but yeah,she and I don't live together well.she plans yo move out as soon as we return from the trip.
I just want this year to be over.__________________Sotired42

Actually my dad passed away from MND and it was more than 20 years ago. My mum was one of the ex-nurses who then went on to do years of volunteer work for MND, visiting families in the Waikato region and helping them with practical solutions.

We need fundraising and awareness raising here in NZ. And maybe a celebrity or two.

I sincerely wish I could offer you some practical help. Have you spoken with EDANZ lately to see if they have any ideas for the situation your d now finds herself in? I have always found them helpful and inspiring to talk to when at my wits end or feeling overwhelmed.

Does your d have somewhere safe to move to, if she moves out?

Also just responding to Torie's wishes to send plants to NZ - unfortunately it is illegal to import fresh or viable plant material without a biosecurity import permit. It's a real rigmarole but our economy depends on NZ staying free from most of the nasty plant & animal diseases present in other countries (as we export agricultural products). You should see the trouble we get into when one of the beagle sniffer dogs finds an apple in our bag at the airport. This is how it goes: you're picking up your baggage off the carousel, then the beagle comes and makes a lot of fuss, and the officer then has to interogate you: "Mam, do you have any fruit in your bag?". Everybody's eyes are on you, as you admit yes you may have forgotten that apple or banana....

SoTired, I hope your christmas trip away does refresh you all, I hope you find somewhere not too hot, with a nice beach.

Hi everyone,
It’s been a while since I posted,but I thought I would check in.also at this point I use this in part as a diary of sorts.ds weight is staying pretty much stable which is the good part.she weighs iaround 49kg.this doesn’t seem to have stabilised anything else sadly.
She has now had two cases of cellulitis since Christmas which have taken a long time to heal.last week she had a seizure which was as frightening as all hell to be honest.it went for quite some time as we had to stay on the line with 111 til the ambulance came and she was fitting for most of that time.her potassium was low but it’s been lower and she has never had that reaction.so she was in hospital nearly a week.while there she had to have her nj replaced.
It has taken me a long time it feels like to recover from the seizure she had.my middle child was very badly affected by what she saw and that’s been hard too. I wake up with knots in my stomach but I’m hoping over time I forget.
We had to return the first dog we tried adopting after the death of my other dog as despite all my diligent checking beforehand she was not good with our other pets.we have since adopted a different puppy who fits better with us and our pets.
I don’t know what the future holds for d.all I know is it’s harder than people think to live like this.__________________Sotired42

I was hoping to hear that things had improved for you. {{{Hugs}}}I hope that the seizure was a one-off and that you get a chance to relax and heal.__________________18 year old boy (Gluten Free/Dairy Free 2005) IP - March/April 2014. ARFID. 2015 - Gastroparisis

Hi Torie,Tali and eternal hope,
Our summer holidays just ended Torie-here you get around 6-7 weeks off from just before Xmas because we have 4 terms in a year.between each term is a two week holiday period except for the last one.so my d was back at school but did have the day off to recover emotionally.smallboy slept through the whole thing so didn’t require any special attention as he is used to his sister going to hospital.
In some ways things have improved Tali-after contacting the health and disability commission and hearing back the very next day that it was likely we had a case,the hospital have finally come on board and are treating my d like an actual human being with actual physical problems.so it isn’t all doom and gloom.
It’s just...me.im struggling.
I’ve gone through so much with d that I genuinely arrogantly assumed that nothing that happened with her could really frighten me anymore.sadden me,frustrate me yes,but frighten me?to be honest I thought that ship had sailed a long time ago.
The universe put me right back in my place there,because since the seizure happened I wake up every day with shaking hands,a sore stomach and an underlying feeling of dread.theres no more reason for those things than anything else that has happened over the last 5 years but ,well,here we are.here I am anyway.
Hoping this feeling passes soon.d is still very pissy about lots of things and so not very easy to live with either,but I am really laying down the law there cause it’s her choice to live with us.and even though she is officially an adult she has no say in how I run my house.she is not enjoying that.
They are talking about putting a peg tube in so that would be nice-aesthetically anyway.she might get more confidence without tubes on her face.
Thanks for checking in guys__________________Sotired42

Hi Sotired,I really feel for you, I was hoping I would read that you were doing better.Thinking of you.__________________Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery, and Living life to the full, like a "normal" teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.

Hi Sotired, thinking of you and your family and sending lot of hugs 🤗🤗🤗🤗🤗🤗__________________D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for a year and WR at age 11 in March 2017. She is back to her old happy self and can eat anything put in front of her. Now working on intuitive eating.

I don't know what to say other than that I really feel for you. That must have been so incredibly scary to witness. You have been living on a knife edge for so many years - and then to have to witness this latest episode, just so awful for you. Do they know why her potassium level became so low again?Your life has been one long road of trauma and PTSD. So unfair. Hugs. You need and deserve them. x__________________Believe you can and you're halfway there.Theodore Roosevelt.

Thanks tooth fairy,mamaroo and melstev,
It’s been interesting here.d had a friend come to stay for a few days-gave me one days notice,but hey,all good,right?😂she’s had a good run at the moment-no hospital since the seizure.so her and her friend had a lovely few days and then suddenly she was looking at two flats,accepted one on the Sunday,moved out monday(yesterday).
She is living about five mins by car away from us so she hasn’t moved far but we really need our own space from each other.when she’s sick she’s very needy,when she’s well she’s pretty obnoxious.so hopefully some time away will work out.
D goes back into hospital on Monday anyway for a planned admission as they want to do the ng as well as nj tube at the hospital now,with an eye to changing that to a peg tube later.so her moving out doesn’t mean that we won’t be doing her admission with her-i will be taking her in and staying with her some of the day.
I am very aware of how lucky we are to be at this point because I was very scared we would lose her back in October.as always I want to acknowledge the support I get from you guys.it often helps me spur myself into action after moping and poor me-ing.you guys helped me find the strength to file a complaint and it actually got us what we needed.now d is well enough to try living in a flat.(albeit ,not far from us).
I am slowly recovering from the frightening experience from her seizure and the second bout of cellulitis.very slowly it feels like,but I am moving forward.
For now I’m just going to enjoy the relatively peaceful house and let myself be calm.

Hi sotired,thanks a lot for that update. We all thought about you and how you are doing.Great that she had some nice days with her friend, such normal things remind us that there is a normal life to be lived outside and that is what we are aiming for.And also great that she moved out to a flat near your house, so you can see her but have some distance also. I hope she can find some peace and learn to live her own life. And I hope you can calm down a bit now and do something nice for yourself. Please keep posting, we are with you in spirit.Sending a big virtual hug from Germany,Tina72

Sotired, I always follow your story, and feel for you. I am glad you keep coming here, and let us know that things are moving. Good strategy to enjoy the serenity in the house, and focus on your own care. It will be a good learning experience for your D to live on her own. Wishing you all the best! xx

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